What Not to Say

I recently read a blog post from a woman about what not to say to a parent of a child with disabilities.  I recalled thinking after I read the post – and I actually replied to it myself – that I didn’t feel the way she did. In fact, I like it when people ask me questions about Catherine. It’s more honest, I believe. And I prefer to deal with things directly and then get past the discomfort but at least have the authentic thinking and feelings and questions out there.

But just this week, I learned what not to say to the parent of a kid with disability.

Catherine has a double ear infection and a busted ear drum. “Perforated” is the medical euphemism, I believe, but the reality is that it’s busted. I ache that we missed it. One of her caregivers noticed green fluid coming from her ear, so  Brian took her to the doctor. She’d had a fever for 5 days, but with all the flu and cold in our house this winter, we just thought she was simply running a bug. Ugh! I feel like the worst mom ever.

When Brian told me about the diagnosis as I drove home from work, the first question I asked him was, “Will it affect her hearing?” He said the doctor said not, but since she is already so sensory deprived, that answer didn’t really satisfy me, and it won’t until I see that she responds the same to sound over time. So even though the doctor says not to worry, I’m not so sure.

The next day, after her diagnosis, I was taking report from the nurse who had watched her overnight. She’d had a good night, and he relayed that he understood what bad ear infections she had. “Yeah,” I said, “I just hope it doesn’t affect her hearing.”

The nurse proceeded to tell me a story about himself  incurring an ear injury after firing a shotgun and experiencing some hearing loss. “It was permanent,” he said. He must have realized what he’d said because he added, “But only at certain frequencies,” I suppose thinking that might make me feel better.

Don’t do that.

Don’t tell the mom of a child with severe disabilities about your experience losing the very thing she hopes her kid doesn’t lose. Even if it only happened to you just a little bit.

Catherine and me on New Year's Day.

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  1. Here’s a different perspective, Ellen… when my oldest was 11 he had a perforated ear drum from a nasty infection. I felt like a terrible mom too! He’s 27 now and his hearing is just fine. 🙂

  2. Hi Ellen. I love your raw honesty in your posts. I think you are being the greatest mom. For what it’s worth, my eardrum bursts so many times as a child that any new doctor who looks in my left ear says “Now tell me what happened to this ear.” And my hearing is fine; selective, but fine. Keep doing what you are doing.

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